My first post on Wish Dish — Savannah’s Challenge — was a short summary of some of the things she’s been dealing with for the last 10 years. Part II is a specific story about what happened over the four days that followed that posting when her cough turned into an emergency.
This is Savannah’s story, but it’s more than that … it is an opportunity to shift our perspective. It’s interesting that Jesus said to enter the Kingdom of God one must have the faith of the child. Faith, in a sense, is perspective. And Savannah’s perspective is heavenward.
Savannah ended up spending four days in the hospital after we took her to the ER. It was amazing through all of it that the doctors never had to put her on an IV and they were never able to identify any sickness. For some reason (twisted spine, lordosis, super weak muscles, gunk getting stuck or something else), she just couldn’t get in the oxygen she needed. Her new normal (for now) is sleeping with these two machines, a BiPAP + supplemental oxygen connected. During the day she uses a vest that shakes her body to dislodge any gunk and then a cough assist that shoots air into her and then sucks air back out. Of course, she still has her 24-hour brace that she is supposed to wear around her torso because of her spine’s curve. The problem is that the doctors think that while it might slow down the progression of the scoliosis, it might also be making the lordosis worse and that could be pushing into her lungs.
Our biggest challenge right now is not knowing what this is and where it is headed.
Something has happened in her body to make her significantly weaker. And what has been a big part of our challenge with this undiagnosed genetic condition is that every year or so a new symptom of the syndrome pops up … or a symptom of a symptom. I have started emailing leading pediatric research centers around the world about Savannah and will follow up with phone calls to try to find someone who has seen a combination of Savannah’s symptoms and markers before. There is very possibly someone out there who has seen this and can help her in a way no one else can. In the meantime, we will continue to try to get some meat on her bones, do daily scoliosis and lordosis therapy, and daily strengthening and breathing exercises.
Most importantly, we will continue to tell her she’s a missionary. We watched “Miracles from Heaven” (for the third time) last night. Savannah said: “She’s a missionary just like me.” When I took Savannah to the doctor Tuesday I had to carry her in. The nurse who hooked up the machine to measure her oxygen, heart rate, and blood pressure kept turning it on and off and then unplugging it and plugging it back in. He said that there must be something wrong with the machine because “those numbers can’t be right.” The doctor came in and confirmed those numbers were right.
They sounded so concerned that after they left the room, Savannah, lying on the table barely able to move, asked me: “Daddy, am I going to die before my time?”
I’d never heard her say anything like that before. I’ve seen a scene like that in movies and I know other families have children with situations much worse than ours that deal with that question often, but Savannah saying that was the first time in these 10 years that the thought of losing her entered my head and my heart. I told her that she can’t die before her time because God is in control and that was all she needed to hear. She immediately smiled, reassured. The faith of a child lying on a doctor’s table just needing to know it was all going to be OK.
And she will be OK. She’s so grateful that her life is inspiring and encouraging others. She carries a hope inside her that gives her spirit light even when her body seems to have very little life at times. She is always positive, she never complains. Isn’t that incredible? She knows that God has purpose for her life. She knows that Heaven is for eternity and this life is for a short moment. One day about a year ago I caught her reading the Bible and I asked her which book she was reading. She was reading Revelations. I thought that would be a difficult book for a nine-year-old, but she said it is her favorite because it talks about Heaven. She asks me questions about Heaven all the time. Savannah’s hope is in something greater than anything on this earth can offer her.
And we can all live with the same hope.
The Bible says that God is perfect and we are not, and the imperfect cannot mix with the perfect. The consequence of imperfection is that it cannot be with perfection. That is the price of imperfection. Just like a speeding ticket is the price of speeding. But God didn’t want to be separated from us. So He sent His perfect Son to pay the price of our “speeding ticket” because we could not afford to do so. The Perfect was separated from the Perfect so that the imperfect did not have to be. The speeding ticket only needs to be paid once, and Jesus has paid it for you, me, Savannah, and everyone. There is nothing you can do to get to Heaven; you can’t afford the price. But you can go because Jesus could afford the price and He paid it for you.
There is no greater love than that. That is the love that fills us as we walk this journey with Savannah. That is the love that gives her peace and hope even in the midst of the storm. That is the love pursuing you today. If you will pause for just a moment and turn around, that love will be right there. That love will wrap itself around you in the most incredible hug you’ve ever imagined and that love will fill you in a way that satisfies every question, confusion, hurt, fear, anger, bitterness, anxiousness, and longing you’ve ever had. For God so loved the world that He gave His one and only Son that whoever believes in Him — in Him paying the price for you — will not be separated from God but instead will live with God in Heaven forever.
Please message me if you have any questions about Heaven, faith, or your eternity. Thank you for all of your prayers and encouragement.
And here is part 1 of Savannah’s Challenge:
Savannah’s Challenge
